New to this site ad trying to figure out how it works. I am trying to post as a new member so I am hoping this goes thru. I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly). My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular. Some …

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Hey everyone! I just want to say that I was where each of you are right now. I wanted to give up. I cried every single day from the pain. I couldn't even be intimate with my husband.

3 weeks ago, I got the surgery. I can already tell a massive difference. I can't have sex for a few more months but wanted to ask those who have had surgery how big of a success it was & if penetration worked!

As goes for my doctor, he is amazing. His name is Dr. Watts. He's located in Salt Lake City, utah. Women from all over the country fly to get he surgery done. He does a ton of them, & even does them in his office to cut costs for those who can't afford it. He's so sensitive e to your needs & cares about helping you get better.

I've seen a few posts about a "surgery." My doctors have not recommended nor mentioned any sort of surgery. The only surgery I've had was a hymenectomy and that was a trigger for my vulvodynia. What is this all about? Can someone explain it? Thanks!

Yes! I got it! They basically remove your vestibule hence "vestibulectomy". They take away the painful parts. Unfortunately, its only recommended for certain cases. Usually if its provoked localized vulvodynia. Its usually only done as a last resort they will try other treatments before they do that on you. It took me 5 years and a lot of frustration before it was even an option and even then they made me do other treatments first before I said I've had enough. Where are you from?

I'm from Mass. My doctors have never talked about ANY sort of surgery. What does provoked localized vulvodynia mean? I know it might seem kind of dumb, but I've basically been in denial... doing the therapies and such, but not LEARNING about the condition, so I don't understand some of the things people are posting about

It means that it is painful when touched (provoked) and in one spot (localized). There is general unprovoked which is pretty much everywhere and all the time pain from what I understand. Have you tried going to Dr. Goldstein? Hes in New York and supposedly really good at what he does. I felt lost too when I first got diagnosed but you learn quick for your own sanity really.

Alana3 wrote:It means that it is painful when touched (provoked) and in one spot (localized). There is general unprovoked which is pretty much everywhere and all the time pain from what I understand. Have you tried going to Dr. Goldstein? Hes in New York and supposedly really good at what he does. I felt lost too when I first got diagnosed but you learn quick for your own sanity really.

So I suppose I would fall under the provoked localized category. I can pinpoint pretty much exactly where it hurts, but it only hurts if I'm sitting funny - which can put pressure on the spots, or if it's touched.

I have not even heard of Dr. Goldstein.. I see a specialist and a physical therapist right now, but I feel like I've tried so many methods and none of them seem to be working. My doctor insists I try one specific PT, but she's really far from me, and does not accept insurance. I'm 23, and I don't have a very good paying job, so I can't afford it..

Hmmmm yeah I'm 27 and my parents help me with medical it's just awful and I have endometriosis too yuck. I wouldn't go straight toward surgery until you've literally tried everything. My pain was thank god only with sex but it was awful and traumatic. No treatments helped until they did surgery but its a lot to think about. I will say it was easy but it was mentally taxing if that makes sense.

makes sense. Just the thought of it is nerve wracking! I'm looking it up now though, and I'm not good with anatomy, but it looks like what they cut out, isn't where I feel my pain. But I'm not sure. I'll bring it up to my PT next week anyway just so it's out there and to see what she thinks.

I don't know how to explain it... It's right at the opening towards the bottom (or I suppose it would be the back..) so it hurts sometimes when I sit.. but more-so when something is touching it like a tampon, or my dilators. It seems like they take out a bunch of skin that is NOT painful for me.

I suppose if you picture a clock, I feel pain from 8-4 right at my opening.

It looks like they take out a lot of the tissue around the opening. Like they take away from the labia almost? Like I said, I'm horrible with anatomy so I don't really know what I'm saying, but my pain is just RIGHT in that circle.. and they take out all this extra surrounding skin.

I was going to post a jpg from Paint to show what I meant, but I can't get it to work.

Hmm I don't know. I'm gonna mention it to my physical therapist at my next appointment just to see what she says. I'm not looking for a definite answer, but it would be nice to just communicate about it with her to see what she thinks.

Jenn89 wrote:I don't know how to explain it... It's right at the opening towards the bottom (or I suppose it would be the back..) so it hurts sometimes when I sit.. but more-so when something is touching it like a tampon, or my dilators. It seems like they take out a bunch of skin that is NOT painful for me.

I suppose if you picture a clock, I feel pain from 8-4 right at my opening.

Sorry girls! I just barely saw that you replied to my original comment. I just want you to know you're not alone. That's for sure. But on the bright side, the way you're explaining things is exactly what I had. I had the pain for a year and a half before I finally got fixed. I saw many doctors and all of them told me I didn't need any kind of surgery because, well, most doctors don't know a lot about it. My doctor said he had people contact him from all around the country. He does many surgeries and truly is AMAZING. He's located in Salt Lake City, Utah. Like Alana said, I would definitely try everything before you jump into surgery. I tried literally everything and nothing worked until I got surgery. It was the best decision I ever made. And if I could give one thing of advice, it would be to not worry about the cost. Because if your condition is as bad as mine was, I would literally be paying it off the rest of my life to be pain-free. If you have any questions, please feel free to ask!!

What kind of things did you try before choosing the surgery? I feel like I've tried it all. She has no new recommendations for me when I go in there anymore. She just tells me to keep using the halobetasol and lidocaine or to go see this very expensive PT that's far away from me

Jenn89 wrote:What kind of things did you try before choosing the surgery? I feel like I've tried it all. She has no new recommendations for me when I go in there anymore. She just tells me to keep using the halobetasol and lidocaine or to go see this very expensive PT that's far away from me

I tried all types of estrogen cream, physical therapy, exercises, and a lot of medications. There aren't many doctors who know what they're talking about & it sort of sounds like your doctor is one of those. I can give you my doctor's phone # and maybe you can talk to his nurse and tell them you live in another state but have heard things about him. He might have options. But it's hard when he has to SEE you. It all comes down to what you're willing to do to fix it. Because it can be expensive, it can cost an arm & a leg, but if it's worth it to become completely pain-free to you, then you should do it!

The doc is Dr Watts and is phone number is (801) 268-6811. He also has a fabulous nurse named Brooke who talked to me about it on the phone a few times.